After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

The Summer Conundrum

The Summer Conundrum

The summer sun—and rain—have arrived. It makes taunts to come out and play and in that action, the contradiction of “doing nothing.” Or playing hooky. It doesn’t matter if it’s indoors or out doors, just doing something different, something frivolous and fun. The fact that playing is something fun, something unproductive, free from responsibility and entirely for ourselves is something that instantly evaporates in chronic illness. What we took for granted is now a favorite treasure.

Funny how I always feel that most during summer time. It’s slightly ironic because I’m not even a hot-weather lover, (moderate temperatures that lean towards cool are my favorite), but it’s when I most battle to find my equilibrium.

I admit, I’m not that successful at it. In fact, even Camelot, superhero service dog, rallies with my closest to keep my dark clouds away and my list of woes from winning the brownie fight (this reference only makes sense to those who have seen Notting Hill—if you haven’t, you’re really missing out). How does Camelot help, you may wonder? He doesn’t particularly care when I think of my want to’s when we’re outside; he just wants me to throw the ball and play. The now matters, and let’s do what we can, he chides.

Which is, entirely correct and why Camelot is more “my keeper” than just my service dog.

It is also true that while my list of what I “can’t do” may seem ever present in my face, the list of knowledge and experiences that I do know is somehow ever present too. Except, since my expertise is primarily in medical knowledge / wisdom, it is not something one ever wants to share with someone you care about. In truth, I have had loved ones either become caregivers or themselves be the one battling a debilitating illness. I also struggle with my first-hand insight and not becoming one of those annoying backseat drivers who can offer you advice, but since they’re not the one behind the wheel, are very annoying. To borrow another reference from Notting Hill, “James Bond never had to put up with that sh%t.” (Again, if you haven’t seen the movie, you’re really missing out.)

Which all is to say, the summer day makes me want to go run out under the sun and leave all the cares behind. It’s a type of chicken-and-the-egg problem which seems to define my medical life, thus bringing us back to square one.

C’est la vie. I’ll take my desires, because it means somewhere in me I remember that half a life ago, I could do that. And I’ll take the appreciation of the moment—and the fact that I can feel the glorious sun once more.

More over, I’ll even dare to be there for my loved ones as I can. But for this moment, I will please Camelot and push away the iPad and do something really fun and just play with him.

Mother’s Day

Mother’s Day